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User
Posted 16 Nov 2016 at 22:07
It's sometime since I've posted. I have been reading updates regularly. David has completed his RT, & HD Brachythearpy. We have spent the summer gardening, coming to terms with our life changing experiences and we are hopefully beginning to make some sense of it all.

We are both feeling less ' punchdrunk'we went away for a wonderful holiday, this also contributed to feeling ' normal' again, what ever that is.

David is getting stronger & fitter, although he still gets days of feeling tired. He has had an ongoing pain in his lower back and haunches, he's seen our GP and the radiologist consultant ..... none seem to have any suggestions :-( we just hope it's not the dreaded PCa. His bladder is a lot better, and he feels his flow has improved.

It really resonated with us talking about the anticipatory grieving process...lets be honest, we think and wonder about the future.... and what ever it holds. David will always be G9 and he's planning on living a long time yet..... we have soooo much to do. We hope he will....

We have had some conflicting advice from the consultants a) the onco, b) radiologist .... onco wants him to have a scan in January the radiologist is saying 6 monthly PSA tests .... any advice would be welcome. Not having too many cancer appointments has been good, but we are aware of the G9 needs constant monitoring.

On the ED front he tried with the pump and hated it, tried the viagra and it was ok.... but left him with a feeling of being light headed and hungover ....he's keen to keep going and said he had a few sexual feelings again which delighted him. The pump gave him days of discomfort... he felt awful.

It is now over a year since his diagnosis, a journey of tears, laughter fear and now we hope to move in to calmer waters, where we can emotionally heal, find space to plan and think.

To any newbies starting on their journey, talk to each other, be patient with each other... and value times of laughter.... use this site and value the advice here, it has been invaluable to us.

Thanks again

Leila x

Edited by member 17 Nov 2016 at 10:24  | Reason: Not specified

User
Posted 09 Feb 2020 at 17:38

Just a few lines to encourage you young men in the G9 club. The ED situation has improved as we are able to have  both intimacy and fun 🤭though we were reminiscing about years ago and giggling.... well what else do we do when the weather is too windy to play out. David was not able to get on with the NHS pump provided, so he bought an battery pump from eBay it was the princely sum of £15.00 and it’s much better, as long as he remembers to change the bloody batteries, it works a treat.

We have also been busy cutting back a big tree and chopping logs for fire wood. Though our muscles ached, and we were knackered it was good to see the wood stacked up. More important it’s just good to get on with life, do our stuff  and forget about the cancer for a bit.

We had a brilliant week away In Northumbria too, walking and enjoying a new area. 

Another  project will be a concert where David will play and sing to raise awareness, about living with PCa 

I’m not posting  just to share our mundane lives, but to share how good life can be , most of the time, and how

we enjoy life. 

 

That doesn’t mean we don’t have dark days especially near the dreaded PSA time.  But it ain’t all bad, and good

times can be had. David’s last PSA was 0.3 and he’s been  off treatment  over 18 months. I hope this gives some encouragement and puts a smile on a few faces. 

Leila 

 

 

 

 

 

 

 

Edited by member 10 Feb 2020 at 15:14  | Reason: Not specified

User
Posted 16 Nov 2016 at 22:07
It's sometime since I've posted. I have been reading updates regularly. David has completed his RT, & HD Brachythearpy. We have spent the summer gardening, coming to terms with our life changing experiences and we are hopefully beginning to make some sense of it all.

We are both feeling less ' punchdrunk'we went away for a wonderful holiday, this also contributed to feeling ' normal' again, what ever that is.

David is getting stronger & fitter, although he still gets days of feeling tired. He has had an ongoing pain in his lower back and haunches, he's seen our GP and the radiologist consultant ..... none seem to have any suggestions :-( we just hope it's not the dreaded PCa. His bladder is a lot better, and he feels his flow has improved.

It really resonated with us talking about the anticipatory grieving process...lets be honest, we think and wonder about the future.... and what ever it holds. David will always be G9 and he's planning on living a long time yet..... we have soooo much to do. We hope he will....

We have had some conflicting advice from the consultants a) the onco, b) radiologist .... onco wants him to have a scan in January the radiologist is saying 6 monthly PSA tests .... any advice would be welcome. Not having too many cancer appointments has been good, but we are aware of the G9 needs constant monitoring.

On the ED front he tried with the pump and hated it, tried the viagra and it was ok.... but left him with a feeling of being light headed and hungover ....he's keen to keep going and said he had a few sexual feelings again which delighted him. The pump gave him days of discomfort... he felt awful.

It is now over a year since his diagnosis, a journey of tears, laughter fear and now we hope to move in to calmer waters, where we can emotionally heal, find space to plan and think.

To any newbies starting on their journey, talk to each other, be patient with each other... and value times of laughter.... use this site and value the advice here, it has been invaluable to us.

Thanks again

Leila x

Edited by member 17 Nov 2016 at 10:24  | Reason: Not specified

User
Posted 21 Nov 2020 at 14:45

Thank you for you’re lovely responses. This horrible disease has blighted too many lives. The physical & physiological impact touches each man, their family and partner. David has been through the mill both physically and emotionally, three years of HT was hard going, to have the man I love next to me in bed without a speck of sexual interest was hard on many levels. His pain and angst, combined with my feelings of rejection, intellectually I could deal with it, but emotionally it was hard. He had pains, mood changes, hot flushes and skin irritation. The GP was not particularly helpful, having what seemed like a cursory understanding of the side effects. This led to my reading, learning and trying to understand this bloody disease and it’s impact on our lives. The skin irritation was awful, he was prescribed lotions and potions, and eventually we found an a cream that helped. The GP was all for prescribing  Pregabalin but David declined. He finished the HT and slowly his interest in sex returned, his skin improved, his moods swings and hot flushes abated. This took about 18 months, we rekindled our physical lives, it was different, we used what resources we could to get an erection, laughing, crying yet  continuing to explore our new sexual experiences. He couldn’t use viagra it gave him a headache, I laughingly said I thought that was my line. We can now achieve penetration sometimes, and we can enjoy each other once again. David has always had skin irritations the HT seemed to make it so much worse. Today we are older wiser, with a decent physical relationship, and a PSA of 0.1 this week. We’ve had comments about this being one of the better cancers, oh you’ll

 

 

 

be fine and other crass comments. We’ve also learned a lot about each other, this disease and it’s impact. 

This site had helped a great deal, the support, care, concern and humour has kept us going, sometimes when the world seemed a bleak place. David was Gleason 9 tb3 so he had the full works of treatment options. For each man and partner the situation  is different, and personal. I hope this gives some insight not just the factual medical, but the reality of some of the feelings, emotional pain, the ups & downs of this all to common disease. 

Lets hope the treatments and understanding improves. This year has been hard for all humanity, but especially hard for this with complex health needs. Take care all, and value the insight this community gives each one of us. It has been invaluable.  Leila x

 

 

Edited by member 21 Nov 2020 at 14:50  | Reason: Not specified

User
Posted 02 Jan 2018 at 15:47
Just had David’s PSA it’s still <0.1 and he has one more injection to go, to complete the treatment. He’s happy, we are happy and now planning some holidays. Looking at health insurance and thinking warm sunny places.

A Happy

New Year, and my thanks for the information, sharing of support and experience it has carried me over the bumps on more than a few occasions.

User
Posted 16 Jul 2019 at 20:57

Thanks for the update Leila

From October I will be in the same situation as David was, albeit with PSA undetectable and only on HT for 18 months. It’s great to hear such a success story, just when I’m about to embark on the same second part of my journey as you have experienced

Edited by member 16 Jul 2019 at 20:58  | Reason: Spelling

User
Posted 09 Feb 2020 at 17:50

Leila 

thanks for such an upbeat posting I am now four months post treatment and have four weeks before I get my key PSA and testosterone blood test. For the last two months I haven’t even thought about my prostate cancer but now I have to book my blood test ready for my next review it starts to pray on my mind again. But like you I am trying to enjoy myself to the full and I am out cycling every day as long as it’s not raining and even when it does I have a turbo trainer in my garage

User
Posted 23 Feb 2021 at 17:48

Good to hear fom you Leila. Glad things are going well from another G9er. 

Dave

User
Posted 17 Nov 2016 at 00:30

Hi Leila,

Re : '...He has had an ongoing pain in his lower back and haunches...'.

After I had brachytherapy the first few months were just fine, then I developed a slight pain in the nether regions, noticeable when I sat down on a hard chair.  I was also getting slight fevers, it felt like I was going down with a cold.  I mentioned this to my consultant and he immediately prescribed a course of antibiotics to clear up an infection in the radiated prostate.  He didn't need any blood or urine tests to confirm his diagnosis, it seemed like he was half expecting it as a regular side effect of brachytherapy.

On the Viagra front, I find that if you save a few up, and then take them on consecutive days, the effect gets stronger each day.

:)

Dave

User
Posted 02 Jan 2018 at 21:26

Totally gunning for you. Get travelling , have some fun ,,and enjoy every single day. Good luck x

If life gives you lemons , then make lemonade

User
Posted 02 Jan 2018 at 21:40

I'm so glad for you, getting such good news at the start of a new year.

Enjoy yourselves, make the most of every minute

We can't control the winds - but we can adjust our sails
User
Posted 02 Jan 2018 at 22:21
Hi leila great news for you both what a good start to the new year, reading your news also filled me with a bit of positivity as my OH has very similar dx to yours, hes just had HD brachy 29th december then onto 5 weeks external beam radiotherapy starts 15th jan, hes also to remain on zoladex for 2years, its good to be able to see that this awful journey does have some good outcomes..good luck sending love and long may it continue..jo.xx

User
Posted 03 Jan 2018 at 15:57

Thanks, for the lovely responses. j.t. It is hard dealing with this horrible disease. It has taken us a long to settle,down grappling with the enormity of the situation. Having said that, we also get times of fun, joy and lots of laughter. David found the HD Brachy quite easy going, but found the EBRT hard going, his sleep patterns were poor, and he felt extremely fatigued, though he did make himself walk an hour every day. He had to stay away from home to have the treatment as we live very rurally, he found this hard going as he’s a real home bird. It has taken him a while to regain his strength. He still gets days of fatigue, but they are less. The Prostrap has caused fatigue and all the other expected symptoms. Having said all that we have painted the outside of our house, grown all our own veg, and managed to do some changes to our garden. We are up beat most of the time,some days it’s hard to be positive. David is 67, fairly fit and keen to squeeze every bit of life he can. We are both anxious about how he will be when the Prostrap finishes, we hope his PSA stays low, and we can get on with the stuff of life. In the meantime back to exploring holiday options.

User
Posted 16 Jul 2019 at 20:20
Brilliant update - enjoy the sunny evenings :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2019 at 21:11

It’s always wonderful to read such a lovely story, enjoy every minute and every nice evening with a glass of something good.

lots of love Devonmaid xxx

User
Posted 02 Oct 2019 at 16:48

David has his latest PSA results today. 0.2 he has been off the HT now for 15 months, strength has returned and his libido is rising.He has bought a new ladder to cut the hedges to celebrate.

 

User
Posted 02 Oct 2019 at 16:56

Fantastic news Leila. So pleased that you are getting your lives back. I have one last injection in a couple of weeks and I can’t wait to get the HT out of my system . It’s so good to hear a happy story.

Long may the low PSA last.

Phil 

User
Posted 02 Oct 2019 at 17:28

It’s great to hear good news on here. I’m in the G9 club and at PSA level less the 0.1 I’m starting to get optimistic. It’s now 24 days till my final HT jab expires 

I have kept myself active all the time since I was diagnosed in March 2018 and in fact I have cycled at least five times a week with a total distance of about 120 miles over the seven day period. Yes I suffer with prolonged periods of exhaustion so I take care I allow myself to recover but I can now manage a 60 mile ride once a week in about four hours.

 As for the libido I surely hope it will return over the next six months and at my 68th birthday in April I’m already considering how I’m going to celebrate , lol

User
Posted 02 Oct 2019 at 18:17
Oh Lord, Leila - was there nothing more exciting to do than the hedges????

Great update x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2020 at 18:49
Leila, this is a fantastic result, it seems today is a good day for a number of members. As long as his PSA stays below 2.0 you can breathe easy, and at the minute you are a long way below that 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2020 at 19:04

Originally Posted by: Online Community Member

If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. 

John would be horrified if he knew what I have written on here over the years 😬

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2020 at 19:07
Super news Leila. So happy for you and thanks for all your support x

If life gives you lemons , then make lemonade

User
Posted 06 Jan 2020 at 19:47
Great Leila, best to you both

Lyn have you got a blog somewhere..I love your humour

User
Posted 06 Jan 2020 at 20:02
David still has a prostate, albeit one which has been turned to mush by radiation, so a slow increase in PSA is entirely to be expected. I’m in the same boat myself having had EBRT 😁.

User
Posted 06 Jan 2020 at 20:51

Thanks Leila for the post. I was also diagnosed G9T3 and have had very similar treatment to David. I'm having my last hormone injection in a few weeks, so I too will be on the slightly worrying journey you are currently on. I'm glad things are going so well for you. Keep posting it is very reassuring for a G9 person to hear ongoing good news. 

Dave

User
Posted 09 Feb 2020 at 17:54
How lovely Leila xx Rock on both of you

If life gives you lemons , then make lemonade

User
Posted 09 Feb 2020 at 22:02

Great to hear from you Leila. You and David keep up the good work and having fun. I'm looking forward to the end of my HT. 

Dave

User
Posted 10 Feb 2020 at 13:22
What a lovely posting.

Thank you for sharing.

Clare

User
Posted 10 Feb 2020 at 19:09

Thank you Leila for such a great post. It gives me confidence for my future.

I am 4 months now since my last Prostap injection and don’t feel any different yet. I’m hoping I’ll feel the HT wearing off soon.

Hoping the future is bright for you both.

Phil

User
Posted 18 Apr 2020 at 12:08

David is due to have his PSA in April, he is understandably a bit reticent in the current climate. He has also been advised he’s due to have a bone scan, again a bit of reluctance on his part. He is thinking of leaving the above for a couple of months and then review. Our underlying concern is his G9 Tb3 diagnosis. He has been off treatments for two years now, last PSA was 0.3 

He has the usual aches and pains of a 70 yr old, still working in the garden, playing and singing every day. When I suggest he moans too much his response is “I’m 70 there is  a lot to moan about” said with a huge grin.

Other wise he’s happy enough, we are so pleased we have a large garden to wander in during these interesting times.So, advice, do you think it’s ok to wait, or should he have the scan and tests, GP surgery seem ok with the wait.... but they are not the most informed up to date folk. I’ve written to his consultant but it takes a while to filter through the system. 

Thanks

Leila 

 

 

Edited by member 18 Apr 2020 at 12:13  | Reason: Not specified

User
Posted 04 May 2020 at 15:13

Thanks for the update Leila. Best of luck for the PSA and bone scan results.

I am G9 and T3b with a relatively low PSA on diagnosis of 27 and I am feeling confident I have this licked now. I can’t think about what could happen because that will only hurt my today’s .....

I am gonna miss my next 3 monthly PSA due to Covid restrictions which was only at my behest anyway as the hospital were happy to leave it 6 months . So may try to fit it in or wait , not sure yet. 
My biggest worry is getting my T back as it’s caused me a lot of mental issues. But it does seem to be easing as I was told on here and by my consultant.

So , hope all goes well tomorrow. 🤞

Phil

User
Posted 04 May 2020 at 16:04
I don't think the test anxiety ever really goes away - some would say it gets worse as time goes on!

Good luck tomorrow x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 May 2020 at 07:49

That’s great news Leila, fingers crossed for the bone scan.

Phil 

User
Posted 09 May 2020 at 11:05

Fantastic news Leila, good luck with bone scan results.

Enjoy the weekend together.

Ange

User
Posted 09 May 2020 at 16:11
Brilliant - happy days x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 May 2020 at 17:52
Best wishes and great news Leila x

If life gives you lemons , then make lemonade

User
Posted 10 May 2020 at 22:37

That's lovely!  

Best wishes for more of those...

User
Posted 27 May 2020 at 11:15

David’s bone scan results, he had a call yesterday from the hospital. It seems he has some levels of age related damage to his shoulders and elbows, hardly surprising for a musician of 70 I suppose. The specialist nurse seemed to think the scan was otherwise clear. So, he’s had a clear bone scan and a 0.1 PSA. A great result me thinks. The sun shines, the results are good, and the garden is looking lovely. Happy days, shame we can’t go to the beach, it’s so near yet so far. 

I hope all you G9 (Tb3)club lads take hope from this result, and long may it continue. 

David does take alternative stuff, whether this has helped, or the treatment has, who knows, but he’s smiling.

Thanks for the ongoing support.

Leila 

 

 

 

 

 

User
Posted 27 May 2020 at 11:36

Wonderful news Leila. I didn't want to tempt fate, by thanking your earlier posts, until the bone scan  results were back. I'm delighted for you both.

Dave (another member of the G9 club)

Dave

User
Posted 27 May 2020 at 12:29

That’s great news Leila. So pleased for you both.

User
Posted 27 May 2020 at 13:04

Great news Leila. I’m sure this will give hope to many.

Best wishes to you both and long may the good results keep coming for everyone.

Angex

User
Posted 27 May 2020 at 22:21
I am smiling for you Leila - a beach sounds like a wonderful dream right now
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Aug 2020 at 15:07
I wondered why she’s always got her eyes closed and biting her lip in the tub ....

And yes it helps me too lol

Good luck xx

If life gives you lemons , then make lemonade

User
Posted 13 Aug 2020 at 16:17

Great news Leila. 0.2 is excellent result considering Davids T is obviously climbing back up 😉.

Theres been a lot of sad news recently so it is good to hear something encouraging.

I had my last PSA in June , last injection Oct ‘19 and it was 0.97 which I was a bit concerned at but the hospital (and Lyn 👍) didn’t seem worried and haven’t called me in. My next appointment will be telephone as so far they are happy.
Next PSA in September so fingers crossed it’s not above the dreaded 2.0.

Enjoy the weather, and your hot tub ....

Phil

User
Posted 13 Aug 2020 at 23:12

Thanks Leila, we like hearing good news. The wife and I were in our hot tub last night, so relaxing after the heat of the day. 

Dave

User
Posted 17 Nov 2020 at 20:34

PSA test tomorrow at 11.30am, the angst doesn’t seem to go away does it. David’s like a cat on hot bricks today, quiet but clearly wobbly. This group give us so much support, thanks for being there.He’s better in the summer when he can gets lost in the garden.Today he’s played guitar got under my feet and watched tele.Not like him at all.

I’ll post when he gets the results.

Leila

 

 

 

Edited by member 17 Nov 2020 at 23:43  | Reason: Not specified

User
Posted 17 Nov 2020 at 21:21
Good luck Leila. I’m sure you won’t need it x

If life gives you lemons , then make lemonade

User
Posted 17 Nov 2020 at 23:28
Good luck Leila x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Nov 2020 at 15:47

Great news Leila. Long may it continue 👍

Phil

User
Posted 20 Nov 2020 at 18:04

Brilliant news Leila.  Really pleased for you both.

Angex

User
Posted 23 Feb 2021 at 15:45
Lovely to hear from you Leila and it’s all sounding good x

If life gives you lemons , then make lemonade

Show Most Thanked Posts
User
Posted 17 Nov 2016 at 00:30

Hi Leila,

Re : '...He has had an ongoing pain in his lower back and haunches...'.

After I had brachytherapy the first few months were just fine, then I developed a slight pain in the nether regions, noticeable when I sat down on a hard chair.  I was also getting slight fevers, it felt like I was going down with a cold.  I mentioned this to my consultant and he immediately prescribed a course of antibiotics to clear up an infection in the radiated prostate.  He didn't need any blood or urine tests to confirm his diagnosis, it seemed like he was half expecting it as a regular side effect of brachytherapy.

On the Viagra front, I find that if you save a few up, and then take them on consecutive days, the effect gets stronger each day.

:)

Dave

User
Posted 17 Nov 2016 at 09:44

Try levitra or Cialis instead of Viagra perhaps?

I can't imagine how a pump can cause discomfort - wrong technique maybe.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Feb 2017 at 17:40

Hi

I had my brachytherapy on the 29th of April 2013, I had 57 seeds implanted and had a gleason score of 6. My tumor was the size of a malteser, about 10mm in diameter.

Prior to my operation I had problems with my libido and it was found that my testosterone was very low, Serum testosterone 7.1 I think my tumor was absorbing what my body was making, I had a PSA of 8.4. 

After my operation I asked my doctor if I could go on a Testosterone supplement (testogel) as this could help my libido. My own Doctor said I could under supervision. Now I go yearly to see a consultant, after I started the daily treatment at the Heath Hospital Cardiff, to monitor the testosterone.I currently have a normal level of testosterone in my body.

I have been using Testogel  since September 2013, today I was at my local hospital Velindre in Cardiff and my PSA was 0.1 so luckily it has not affected my cancer cells as some might think it would.

I now wake with an erection most days, as I did some many years previous, I still need some help maintaining this and Cialis is the real helper in keeping it going.

The side effects of low dose brachytherapy for me now; are dry ejaculations, loose stools and a need to go very soon after eating, sometimes followed by trapped wind. These symptoms are mostly normal according to my nurse practitioner, who sees many prostate patients.

I can recommend those that need it to use Cialis, I am not sure if you can get the testosterone treatment that I am on?

2ddesign 

User
Posted 02 Jan 2018 at 15:47
Just had David’s PSA it’s still <0.1 and he has one more injection to go, to complete the treatment. He’s happy, we are happy and now planning some holidays. Looking at health insurance and thinking warm sunny places.

A Happy

New Year, and my thanks for the information, sharing of support and experience it has carried me over the bumps on more than a few occasions.

User
Posted 02 Jan 2018 at 21:26

Totally gunning for you. Get travelling , have some fun ,,and enjoy every single day. Good luck x

If life gives you lemons , then make lemonade

User
Posted 02 Jan 2018 at 21:40

I'm so glad for you, getting such good news at the start of a new year.

Enjoy yourselves, make the most of every minute

We can't control the winds - but we can adjust our sails
User
Posted 02 Jan 2018 at 22:21
Hi leila great news for you both what a good start to the new year, reading your news also filled me with a bit of positivity as my OH has very similar dx to yours, hes just had HD brachy 29th december then onto 5 weeks external beam radiotherapy starts 15th jan, hes also to remain on zoladex for 2years, its good to be able to see that this awful journey does have some good outcomes..good luck sending love and long may it continue..jo.xx

User
Posted 03 Jan 2018 at 15:57

Thanks, for the lovely responses. j.t. It is hard dealing with this horrible disease. It has taken us a long to settle,down grappling with the enormity of the situation. Having said that, we also get times of fun, joy and lots of laughter. David found the HD Brachy quite easy going, but found the EBRT hard going, his sleep patterns were poor, and he felt extremely fatigued, though he did make himself walk an hour every day. He had to stay away from home to have the treatment as we live very rurally, he found this hard going as he’s a real home bird. It has taken him a while to regain his strength. He still gets days of fatigue, but they are less. The Prostrap has caused fatigue and all the other expected symptoms. Having said all that we have painted the outside of our house, grown all our own veg, and managed to do some changes to our garden. We are up beat most of the time,some days it’s hard to be positive. David is 67, fairly fit and keen to squeeze every bit of life he can. We are both anxious about how he will be when the Prostrap finishes, we hope his PSA stays low, and we can get on with the stuff of life. In the meantime back to exploring holiday options.

User
Posted 08 Jan 2018 at 13:45

Any advice in travel insurance please, we a planning a trip to europe. Just to recap David is G9 T3b he's on hormone treantent until March 2018, he has hypertension and also takes tamsulosin. He currently feeling well and his PSA is <0.1 

I have asked this before, but things change so Im just checking for advice. We have the EHIC.

 

Thanks Leila. 

User
Posted 08 Jan 2018 at 14:40

Hi Leila

i used insurancewith last year for holidays in Europe found them really good, i am terminal and i think for myself and the rest of the family with everything covered was £140

i have just had a promo code sent through from them for 20% off it is "sun20"

Hope that helps

Si

PS just noticed on the email

* Please note, our online prices automatically include a 15% discount. The 'SUN20' code gives you an additional 5% off, making a total saving of 20% against our call centre prices

But every little helps

Don't deny the diagnosis; try to defy the verdict
User
Posted 31 Jul 2018 at 09:19
David has completed 3 yrs go HT, last injection was in March 2018. He is getting constant aches in his legs and feet, he finds it quite debilitating on some days. He continues to be reasonably active, though sometimes he finds it hard. Has anyone else found this after completing the Prostrap injections. He is also scared that being off the HT will allow the cancer to spread, he’s T3B G 9 so I can appreciate his fears. Any advice would be welcome. Thanks Leila

User
Posted 31 Jul 2018 at 10:37
taking hormone holidays when the psa is under control is generally considered to be beneficial in terms of quality of life and according to studies I have read doesn't impact life expectancy.

PSA needs to be regularly monitored of course and make sure any unexplained pain is investigated.

User
Posted 31 Jul 2018 at 10:57

Thanks for your reply, he has completed the course, and  hopes he does not have to use it again.He is concerned about the constant aches he has in his lower limbs, and if this is a side effect of coming off the  Prostrap or something else. 

 

Thanks Leila. 

 

 

User
Posted 31 Jul 2018 at 14:45

Stop worrying about it and get it checked out...

User
Posted 31 Jul 2018 at 17:05
Thanks, it’s in hand appointment made by me. You are right it needs checking out.
User
Posted 31 Jul 2018 at 17:34
Hi Leila

Tony was diagnosed in 2006 gleason 9 T3B , he had RT and zoladex. he has been on and off hormones from about 2 years after the rt, think the first time was for about 3 years then on it again for about a year and so on. he went back on it again at the start of last year I think it was and was told he would have to stay on it until it stopped working, his psa has just started to go up and they have now added casodex. I remember the start of hi journey so well and thinking he wouldn't be around for long and 12 years on he is still here and in himself quite well apart from he has started to get really tired lately. His oncologist told him when he first came off hormones that the longer he could stay off them the longer they would work and this has proved to be the case.

hope all is well with David

regards barbara

User
Posted 05 Jan 2019 at 18:31
David has been off the HT for just over 6 months now, after three years of it.He has developed pains and discomfort under his right rib cage, sometimes a sharp pain sometimes a dull ache. His PSA has been consistently <0.1 for over 2 yrs and since being off the HT.

He is also beginning to worry that being off the HT could open him to a reacurrance of the PCa, and every ache or pain is a worry.

As he was diagnosed locally advanced G9 Tb3 N0 M0 and told he is on a “curative path “ he has been really positive until recently. He has read that some types of PCa don’t give off PSA and his was 8.8 (quite low) at diagnosis, this has made him feel very uneasy.

Has seen a GP but tbh he’s not reassured.

I read regularly but I’ve not posted much, as we’ve been trying to forget about cancer for a while.

We are waiting to see the urologist for hopefully some reassurance.

Any advice would be appreciated.

All the best for 2019.

Thanks Leila

User
Posted 05 Jan 2019 at 19:13
Hi Leila. Nice to hear from you again. Basically your news is good although not being perceived as that which is a shame. I think all of us at a certain age are aching all over , and it only takes a certain extra activity to set off a raft of pains. My legs are simply awful and I couldn’t run across a road literally at 51. I’ve been told it’s nothing to do with cancer , it could be Cialis , but I’m worried it’s lymphodoarma tbh.

I would never compare or “ black cat “ someone , and I know our paths have been different , but even though I had surgery and was found to be G9T4N1M0 , I have done nothing bar 11 months of Bicalutamide. I’ve had zero treatment for two years and psa up to 82. As far as I know nothing has changed inside me and I feel well and healthy apart from my legs. I insisted on keeping a sex life if at at all possible and we have made the most of that. I know I’m running the gauntlet and am going to die very young, but in the vast majority of cases it is a very slow growing disease and nothing needs to be done in panic — as said the article that for localised low Gleason PCa doing nothing was as effective as having all the treatments over a 10 year scale. I’m solidly concerned with living with the best QOL rather than dying. I know the disease is unpredictable and I’m not a doctor , but it seems your OH could be looking forward to a great rest and new beginning and return of normality / even libido , rather than worrying about something that can be dealt with again later on. I know it’s not easy as I’ve been stressed all Xmas as I have my review next Weds. My Onco hates me as he’s used to everyone going in saying “save me “ , and I go in saying “ leave me alone “. I guess we will see just what happens. Try and enjoy some recovery and better quality of life. Happy New Year both x

If life gives you lemons , then make lemonade

User
Posted 05 Jan 2019 at 20:05
Hey Leila, you are correct that there are rare prostate cancers that don’t give off any PSA (or hardly any) but it would have been identified at the template biopsy stage. I think they would have mentioned it to you at the time so the fact that you are not aware suggests that he had a nice run-of-the-mill adenocarcinoma. But you could check with the GP or look back at the original diagnosis letters if you have kept them.

My instinct is that the pains are most likely to be unrelated.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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